Marie Livingston, the mother of an 8-year-old with Down syndrome, was at a conference in Austin about three years ago when she first heard about the research that she hopes will pave the way for her daughter to learn to read.
“I was listening to these people speak about the progress children can make,” Livingston said. “If you have a child with Down syndrome, you know what a big deal that is.”
Now, thanks in large part to her efforts, the British-born program will be replicated in the North East Independent School District – its first such attempt outside the United Kingdom.
The program is based on the work of Kelly Burgoyne, a researcher with Down Syndrome Education International, whose UK study found that children who received 20 weeks of specially-designed intervention for 40 minutes a day could significantly improve their reading and language skills.
Livingston's child attends a private school in New Braunfels but she began collaborating with North East ISD because the larger district has more resources to carry out a pilot of the program.
“We're always looking for something new,” said Judith Moening, NEISD's executive director for special education.
Burgoyne said her study is the first randomized controlled trial of reading and language in children with Down syndrome. It included about 60 children.
Students receiving the interventions learned to read more words than their peers who did not. After two 20-week sessions, 48 children were able to score on a reading test, compared with 32 before interventions began.
Some children progressed faster than others, Burgoyne said, noting that all of the participants had Down syndrome but some had brain damage or other disabilities as well.
She said her work is based on successful practices for instructing any child to read, with special adaptations for children with Down syndrome — who, for example, are typically good visual learners, which her program takes into account.
The program also incorporates phonics, sight words and new vocabulary.
“We were on the edge of our chairs,” Livingston said, describing the first time she saw videos of elementary-age participants in England reading short story books from cover to cover. She said that, intellectually, her own daughter is considered at the high end of the range for children with Down syndrome but can't read like the children in the videos.
Ten children between the ages of 5 and 8 will participate in the pilot here, including Livingston's daughter, Lilly. Her teacher from New Braunfels Christian Academy will also take part.
All 10 will receive the interventions, but not until the spring semester. For now, they and their teachers will carry on as usual. Periodic evaluations will help Burgoyne determine later if the interventions have any impact on learning.
Last week, she was here in San Antonio to conduct baseline assessments of the children in the pilot.
On Wednesday morning, Burgoyne met with 6-year-old Rafael Hildalgo for a roughly hour-long battery of tests.
Burgoyne held up a card with pictures of a lion, a bear, a cat, and a giraffe. “Where's the lion?” she asked and Rafael pointed. Other tests required Rafael to read increasingly difficult words and to describe simple pictures.
“Wow!” Rafael exclaimed when Burgoyne produced a new test booklet.
The only costs to North East are in staff time to train teachers and implement the new program, Moening said.
“It's an opportunity for our teachers to participate in something that's pretty exciting,” she said.
A foundation started by Livingston, called LLQ USA, will cover other expenses and is continuing to raise money.
Burgoyne is to return in January for another assessment and to train teachers. Students at the University of Texas at San Antonio will pitch in to help with evaluations.
If the pilot is successful, Burgoyne plans to conduct a larger trial.
Livingston said she hopes that one day her daughter will be able to take written tests and even write book reports.
“Everything in the education world has to do with knowing how to read,” she said.
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